Preprint Article Version 1 Preserved in Portico This version is not peer-reviewed

Parent’s Perception on the Types of Support Given to Families With an Infant With Phenylketonuria

Sophie Cassidy
,
Sharon Evans
ORCID logo ,
Alex Pinto
,
Anne Daly
ORCID logo ,
Catherine Ashmore
,
Suzanne Ford
ORCID logo ,
Sharon Buckley
,
Anita MacDonald
*
Version 1 : Received: 19 April 2023 / Approved: 20 April 2023 / Online: 20 April 2023 (05:16:16 CEST)

A peer-reviewed article of this Preprint also exists.

Cassidy, S.; Evans, S.; Pinto, A.; Daly, A.; Ashmore, C.; Ford, S.; Buckley, S.; MacDonald, A. Parent’s Perception of the Types of Support Given to Families with an Infant with Phenylketonuria. Nutrients 2023, 15, 2328. Cassidy, S.; Evans, S.; Pinto, A.; Daly, A.; Ashmore, C.; Ford, S.; Buckley, S.; MacDonald, A. Parent’s Perception of the Types of Support Given to Families with an Infant with Phenylketonuria. Nutrients 2023, 15, 2328.

Abstract

Background: The diagnosis of phenylketonuria (PKU) in an infant is a devastating and overwhelming event for their parents. Providing appropriate information and support is paramount, especially at the beginning of a child’s life. Investigating if parents are receiving the right support is important for their continued care. Methodology: An online survey was distributed to explore parents’ perceptions of current support and information provided by their healthcare provider and to rate sources of other support (n=169 participants). Results: Dietitians received the highest (85%) rate of “very helpful” support. Overall, parents found Facebook to be helpful for support, but had mixed reactions when asked if healthcare professionals (HCPs) should provide advice as part of the groups. When rating the most effective learning methods, the top three were: 1:1 sessions (n=109, 70%), picture books (n=73, 50%) and written handouts (n=70, 46%). Conclusion: Most parents were happy with the support and information they received from their dietitian, but required more support from other HCPs. Facebook groups provide parents with the social support that HCPs and their family may be unable to offer, suggesting a place for social media in future PKU care.

Keywords

PKU; Phenylketonuria; social media; Facebook; healthcare professionals; dietitians; support

Subject

Medicine and Pharmacology, Dietetics and Nutrition

Copyright: This is an open access article distributed under the Creative Commons Attribution License which permits unrestricted use, distribution, and reproduction in any medium, provided the original work is properly cited.

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